WTCF! A Cystic Fibrosis Podcast

Ingrid chats to CFNZ Chief Executive, Lisa Burns. They discuss what CFNZ does for CFers and their families throughout their lives and what the organisation's plans are for the future to make sure no one is left behind now that Trikafta is funded. There's still no cure, and not everyone can take Trikafta, so CFNZ want all in the community to know that they are there for everyone. Listen to...

Ingrid chats to Dustin Raynor, better known as professional wrestler Dustin Bozworth. Dustin shares his story living with cystic fibrosis from childhood, to pro wrestling, to reality TV on ‘Stone Cold’ Steve Austin’s Broken Skull. It’s an inspiring conversation and he’s a very unique and ambitious person. We’re proud to have spent time learning more about his amazing life story so far.

Ingrid shares their journey during a recent hospital admission and Orson gives his views on the whole adventure

Ingrid sits down with Bella Powell, a young woman with CF who was the first in New Zealand to get Trikafta thanks to the late Sir Bob Elliott – who gave her this gift of life during his final months by funding the drug for her. Following on from our last episode with Patrick Gower who broke the Trikafta story here in NZ, Bella shares her side of the story – her childhood in hospital, facing declin...

Ingrid sits down with the well-respected and much-loved New Zealand journalist Patrick Gower to talk about the part he played in highlighting the need for funding of Trikafta for New Zealanders living with Cystic Fibrosis. This is a highly emotive interview and Paddy was very generous with his time. He shares how his experience getting to know the NZ CF community has changed his life and what it w...

Ingrid chats with Helen Ulyatt, mother to an active 9-year-old CFer called Sophia. They chat about how she prepped for starting school and all the fears and worries surrounding this milestone, as well as managing trips to camp and hopes for the future. ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sanitiser for free when you use our exclusive global c...

We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit, which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message for us here  - comments, stories or question...

In this episode, Ian and I review the brilliant film Never Better and chat with its writer-director Julianne Fox. Julianne, who has CF herself, filmed Never Better in late 2020 and received great reviews when it played at film festivals. W#e chat about how the project got started, her life with CF and more. We hope you enjoy this episode of the podcast. Head back to our blog to read our full revie...

In this episode, Ian and I get to grips with life with a CF toddler. It's a general update on how CF affects our everyday life, plus a few tips on navigating a few milestones as your little CFer grows up.  As always, we end up blowing off steam with many fits of giggles. We hope you end up finding some of this info useful regardless of our gaffs or at the very least we manage to make you smil...

Most of the New Zealand CF community know Lizzie McKay, a 30-year-old person with CF who works for CFNZ as a Communications Coordinator.  Her friendly and bubbly nature makes her easy to like but her story is not an easy one to hear as a mother of a little one with CF. In this episode, we discuss Lizzie's role at CFNZ and the organisation where she's found a whole new family. She also shares...

Chris Macleod is a Candian with CF who was one of Canada's first patients on Kalydeco ten years ago. He’s now 52 and has advocated for CF for many years. He’s also written a book called Beating The Odds: 11 Lessons to Overcome a Health Crisis and Lead a Resilient Life. We talk about his life with CF, his career as a Lawyer and how that's helped him advocate for the Canadian CF community and how hi...

Welcome to Season 2 or What the CF! We're so happy to be back and ready to share lots of CF stories about treatment with you. If you're part of the CF community and not aware of Trikafta (or Kraftrio) then you've been living under a rock! This 'miracle' treatment isn't yet funded in New Zealand and we want that to change ASAP.  Edward Lee is a 39-year-old PWCF living in Wellington. He self fu...

Ingrid chats to Eilís Moroney, the author of 'Our Baby Has 65 Roses' and mum of a little person with CF -  two-year-old AibhÍn, about diagnosis and how writing a book was her coping mechanism. Listen to the podcast for your chance to win a copy of the book, and email your answer to wtcfpod@gmail.com. You can also purchase the book here. Find out more about CFNZ here to access resources. What the C...

Eddie, Henry and David are all parents of little CFers. Ian chats to these three dads about diagnosis, telling friends and family, and what NOT to say to a CF parent. Thanks again to our guests for sharing so candidly and we know it's going to help others in the community. For further info visit whatthecf.com.

Trigger warning  - this podcast discusses pregnancy termination following pre-natal testing. Ingrid chats with Genetic Counsellor Kelly Sullivan about all things genes when it comes to getting the Cystic Fibrosis initial diagnosis. Kelly explains what causes CF, what happens in your genetic counsellor meeting, and the options for couples wanting more children. Check out our blog for further r...

Sophie, Kayla and Jessica are all mums of little CFers born during the pandemic. Ingrid chats to these mums about diagnosis, telling friends and family and what NOT to say to a CF parent.

Ingrid chats to Sue Lovelock, Southern Fieldworker for Cystic Fibrosis New Zealand.  Sue has worked as a fieldworker for 14 years and knows all too well the pain and fear of diagnosis, the heartbreak of the disease and the positive and happy lives that people with CF can live in NZ. Thanks so much to Sue for such a great chat. Find out more about CFNZ here https://www.cfnz.org.nz/ to access a...

We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message for us here  - comments, stories or questions...

Check out the trailer for the very first episode of What The CF! A Cystic Fibrosis Podcast - COMING SOON -  episode 1, we chat about our journey to getting a diagnosis for our son -  just prior to the first lockdown in March 2020.